For healthcare professionals

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We provide two separate but related services: the Highly Specialised Service (HSS) for rare neuromuscular disorders and a regional neuromuscular clinic.

Please see below for which patients are suitable and the referral pathways for each of these.

  • Physio with a patient
    Highly Specialised Service for rare neuromuscular disorders
  • picture of two boys
    NHS Regional neuromuscular clinic

The Highly Specialised Service for rare neuromuscular disorders

What services do we offer?

The NHS Regional neuromuscular clinic

What services do we offer?

  • We see patients from the North East and Cumbria with a wide range of genetic neuromuscular diseases such as Myotonic dystrophy, Duchenne or Becker muscular dystrophy, Facioscapulohumeral muscular dystrophy (FSHD), Spinal Muscular Atrophy, congenital myopathies, congenital muscular dystrophies, congenital myasthenic syndromes, myotonia congenita, as well as limb girdle muscular dystrophies, myofibrillar myopathies or distal myopathies.
  • We also see patients with inherited neuropathies (Charcot Marie Tooth syndrome), typically to provide input in making the diagnosis and providing specialist physiotherapy input in complex cases, although many patients with these conditions can also be appropriately followed up by local neurology or paediatric teams.
  • Our new patient clinics are held at the Centre for Life in Newcastle, and aim to be a one stop shop with doctor, physiotherapist and neurophysiology at the same appointment.
  • Follow up clinic appointments are at peripheral clinics across the north east and cumbria
  • We also have a Care Advisor and Specialist Nurse available to support patients.
  • As well as assessing patients in person we can provide remote advice usually through discussion at our weekly MDT on a Friday.
  • Muscle tissue can also be sent to the Muscle Immunoanalysis Unit for protein expression studies.
  • Blood for genetic testing can be arranged through the local genetics laboratory in line with the National Genomic Test Directory.
  • How to refer:
    • For clinical appointment or MDT discussion please send detailed clinical information to nuth.hss.lgmd.referrals@nhs.net
    • To refer a muscle biopsy for assessment please complete the referral form available at this link
    • To request genetic testing please consult the current National Genomic Test Directory for eligibility criteria.

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